Glossopharyngeal Neuralgia
"I find keeping perspective and a 'correct' attitude key to managing GPN...." Maxwell Gomera
Keeping perspective: My story
One of the great unmissable of being physically unwell while living in ‘The West’ is when your visiting African friends accuse you of suffering a ‘Northern disorder’ and your sister suggests you go for ‘the test.’ This vignette dramatises the mindset I have lived with for five years. A combination of how little is known about Glossopharyngeal Neuralgia (GPN) pitted against formidable odds. It occurs to me that there may be others out there suffering wrong diagnosis or friends, family and society that understands too little.
Five years ago, I knew something wrong was going on, I just couldn't fathom what. GPN is a disorder beautifully engineered to cause maximum pain but elude diagnosis. It took Specialist Doctors some four months to reach correct diagnosis. As it turns out, I was lucky: others go for years or a lifetime without correct diagnosis. I was to learn that GPN is a “rare chronic pain syndrome” that causes intense, shooting pain in the back of the tongue and throat, tonsillar areas, and middle ear. The pain is “due to malfunction of the glossopharyngeal nerve (9Th Cranial Nerve), which moves the muscles of the throat and carries information from the throat, tonsils, and tongue to the brain.”
Glossopharyngeal neuralgia usually begins after age 40 and occurs more often in men. For me it was a ripe young age of 37! Often, its cause is unknown. However, it sometimes results from an abnormally positioned artery that compresses the glossopharyngeal nerve near where it exits the brain stem. Rarely, the cause is a tumor in the brain or neck.
My experiences have been painful, often enlightening but never one I would wish on anyone. Fortunately, my boss understood the need for specialist attention. I visited some of the best ENT and Dental surgeons in Africa and Europe. For a while, I was subjected to a ping-pong between ENT surgeons and Dental surgeons – each of whom thought mine was a Dental or ENT problem respectively. Both plausible. Neither correct. Not entirely at least. It must have been frustrating for them: they just couldn't figure out what it was.
I am a true believer in the wonders of modern medicine but I must say my faith was pushed to the limits, threatening to set me on a path from which I could never return.
I kept faith in the power of prayer. As “luck” would have it, I bumped into a General Practitioner who had come across an Australian patient with similar condition. He suggested I go back to my ENT surgeon and ask him to investigate the possibility of Trigerminal Neuralgia (TNG). The diagnosis was to turn out wrong but close enough. But the medication was a God-send! After taking the meds I managed, for the first time in over three months, to swallow solid food with no pain in the throat – and I slept like a baby! Although the two are different disorders, the drug therapy for TNG is equally effective on GPN.
Within three weeks, the pain disappeared. Yaay! Kwakuhle! Zvangu zvaakufaya!
Over the years, I have suffered GPN attacks in cycles of approximately 24 months – each lasting between 3 to 8 weeks. Unfortunately the drugs tend to become less effective with age – and the pain more unbearable. The worst agony is watching my children, wife and friends trying to cope. Their patience and sympathy unparalleled… Your kindness is not taken for granted!
Last week I visited a neurosurgeon. We both agreed that the drug therapy is increasingly becoming a less viable option. I will have to go for the “biggie” – the knife and surgical option. Fortunately for me, there is one that offers much hope. Few neurosurgeons have vast experience operating on GPN patients, simply because there aren't too many of us suffering GPN. Fewer still are willing to try. But I will take my chances!
In the unlikely event that you know someone who suffers the same, I hope this note offers some hope, changes your perspective, helps with correct diagnosis, or simply reduces the stress on you.
To my African friends, GPN is not an exclusively northern disorder. To my sister, it is not HIV or even related. To my brother Henry, it is not cancer – although in some cases the brain tumour might suggest so. And to my children – No, GPN is not fatal. The pain drives me nuts. But the disorder is neither fatal nor inheritable. In the literature, they claim GPN causes the worst pain known to date – if ever there is a way of measuring pain intensity. I have no doubt it is a biggie, but I will be fine.
Maxwell Gomera
Comments
Bernardin
12.09.2021 17:19
insightful. thank you very much for sharing @Gomera
Aisa
02.09.2021 13:22
Dear Max, yr wisdom & peace is so humbling. Clearly His Spirit is upon u; He has not given us a spirit of Fear, but of power, love & a sound mind. By His stripes, we are healed! With u in prayer .
Grace Chirinda
25.08.2019 14:37
https://www.bible.com/bible/114/ROM.8.11.NKJV The above verse, testifies how God Spirit in you is so powerful that he is able to restore your health total. We will continue to pray for your family.
Florence Chawatama
20.08.2019 03:28
By his stripes u a healed in Jesus name. God is in control of the situation, he never sleep nor slumber. I pray for total healing upon ur health Mhofu Zendanetyaka
Angela Charewa
19.08.2019 13:23
Angela Charewa; Our Good God is in control my brother we pray everything will go well and you will be back on your feet no weapon formed against us shall prosper
Sally
19.08.2019 12:31
It is well Mhofu, it shall all come to pass. Thinking and praying for you, Chihera Loice and family.
Josephine
19.08.2019 10:37
Fear not Mhofu the Lord protects his own, keep going, waiting patiently for a testimony..
Minnie Mushoriwa
19.08.2019 08:55
With you in prayer. God makes a way where there is no way. He made a way for you. Let's continue trusting him. He knows the plans he has for you my brother. Let's continue believing . It is well .
Patience, Farai Kiss (Bako)
19.08.2019 08:51
All is well my brother, babamunini, will always be with you in prayers, he is faithful and will always be, for his promises are always 'yes' and 'Amen', the great physician, the healer of all diseases
Marjory
19.08.2019 08:38
With you in prayers as you go through the operation . God is with you and you will be healed und the hand of God’s servant the Dr
Rutendo Juru
19.08.2019 08:22
Have you tried STC30 at all? Stem cell 30 helps rejuvenate the dead cells and is effective in most health challenges
Edith
04.07.2019 17:37
With God all things a possible kule. Am glad you've kept faith in the power of prayer. I don't doubt that you'll get over this with God. It's gonna be well my wonderful sekuru.
Hamu Magdeline
20.06.2019 06:09
Max Our Almighty God is in control...nothing is impossible with him...his hand is not too short to do anything...i pray for miraculous recovery in Jesus name.
Mxolisi Sibanda
18.06.2019 20:29
Best wishes for the op Max. Hope that brings an end to the excruciating seasons of pain. Keep strong and being an advocate for others in similar situations.
Jorge
16.06.2019 19:30
Strength my friend...may a cure come your way. Faith has no equal and I sense you recognized this through what is clearly a trying period. Our prayers are with you.
Alex Owusu-Biney
15.06.2019 15:27
Thanks for sharing. Max, I pray the good Lord meet you with HIS unique kind of healing
Edwin Tambara
14.06.2019 07:22
Thanks for sharing Max, praying for your healing. All shall be well.
Bee
13.06.2019 21:30
Thinking of you Max. Wishing you cured!
Winnet Mupaso
13.06.2019 15:18
My thoughts and prayers are with you my brother. Keep the faith, our God is faithful.
Mike
13.06.2019 08:18
Shamwari my heart is with you. Katrin had severe trigeminal nerve damage a few years ago. Months in a dark room was only way to deal wit the pain. Eventually epileptic drugs helped, now back to almost
Prosper
12.06.2019 17:27
Thank you Max for sharing. I am with you brother. I was diagnosed with Acute Arthritis that is gout that cannot Ben treated easily. 23 years of experimental drugs by a senior thug Dr who owns Trauma
Blessings Muza
12.06.2019 13:36
Yes you will be well mzukuru. Keep the faith for your family if not for all of us! There is God in heaven...
Joe Chari
12.06.2019 10:07
😢😢it shall be well my brother. Keep the faith we will always pray for you. Keep fighting
Tashiana
12.06.2019 09:35
Aww max am praying for u,all the best and i trust God u will be fine...loads of love m
Oliver
12.06.2019 07:56
Hey, Maxwell, all will be well. And thank you for sharing such a personal situation. It will help a lot of people who have been suffering in ignorance. God bless.
Charity
12.06.2019 07:42
Maxwell thanks for taking a moment to enlighten the world. Knowing the winner in you am confident you overcoming this...
Kenny Muny
12.06.2019 07:06
Get well soon bro
Stephanie
12.06.2019 06:12
Hey Max, All shall be well and healing is your portion. Your story is really touching and enlightening.
Agie
12.06.2019 05:15
All will be well Maxwell, healing is upon you... Thanx for sharing, truly inspiring bro.. GOD is with you
James C. Morant
12.06.2019 04:50
Hello Max!! Praying for your comfort and healing. Glad that the diagnosis has occurred, and a course of medical intervention is on the horizon. Best wishes always!
James
Shova Khatry
06.05.2017 12:05
Truly inspring! Maxwell, what a great speech! Kids need to hear more such advice. Congratulations on a speech well written! Taku, Loice, Panashe and Vimbai must've been brimming with pride!
Hamu magdeline
05.05.2017 17:18
What a paiful experience. ..i didn't know max there's always one who provides the right solution and treatment to wipe your pain...he will direct the right treatment ...our Almighty God
Ruth Igamba
20.04.2017 07:27
Pole sana Max, I didn't have an idea you've been silently and courageously experiencing this great pain. You can lean on our shoulders whenever need be, you are our colleague but also our brother.
Anne Ogoti
20.04.2017 05:30
This is quite an experience! May Jesus Christ, the Great Physician grant you healing. Amen.
Latest comments
10.08 | 16:04
Continue to rest in peace sekuru
10.08 | 07:11
Till we meet again keep resting in peace sekuru
05.07 | 09:26
Isitshwala, the food of champions! You took me down memory lane with this piece, my friend. And with a smile too!!
21.06 | 10:01
RIP will always be missed
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